Survey from the Cancer Support Community

Dear Cancer Experience Registry Member, We invite you to take part in a research study with the Cancer Support Community. First, we want you to know that study involvement is entirely voluntary. Your decision to participate will not affect services provided to you in any way. You will be presented with a brief survey that will take approximately ten minutes to complete. You are free to choose whether or not you will take part in the study. You may refuse to answer any question or to stop taking the survey at any time. In order to participate in the study, you must be at least 18 years of age, able to read and understand English, and have received at least one cancer diagnosis at some point in your lifetime.   We are interested in understanding your personal preferences in regards to how your medical or health data is shared with others. This information will help us determine if cancer patients and survivors are comfortable sharing their data with different stakeholders and if so, for what purposes. POSSIBLE RISKS No physical risks are associated with this study. You may experience slight discomfort associated with the disclosure of your perspectives. You are free to refuse to answer or stop participation at any time.  Your responses will be confidential and anonymous. There is no way we can connect your answers back to you. The Cancer Support Community will securely store all study materials and they will only be accessible to the research team. The information gathered may be used for publications or presentations. POTENTIAL BENEFITS  There are no direct benefits to you for participating in this study. However, your study involvement will help to inform the work of the Cancer Support Community as we seek to better understand the patient/survivor perspective on data sharing. PROBLEMS OR QUESTIONS If you have any problems or questions about the study, your rights as a research participant, or any research-related injury, contact Elizabeth Franklin, LGSW, ACSW at 202-650-5369. TAKE THE SURVEY Please click this link to participate in the survey.